Now that he is actually eating foods and I have been reading about others and their feeding restrictions I wanted more details. (I probably got them in the beginning but was too overwhelmed) So for all you MCADD mommas here is what he said.
He explained that for years they kept their MCADD kids on special diets and that the end just didn't justify the means. The kids ended up losing weight. And as some of you know, the parents went crazy trying to keep their children away from certain foods. It is impossible to have a somewhat normal life and know exactly what is going in your child's tummy. They tried not regulating diet and the results were great. I have also run across a sweet 18 year old with MCADD super willing to answer any and all questions. She is God sent! She described herself as a fussy eater, she stated that her parents never really restricted anything and that she ate everything in moderation. The only thing that she steers clear of is coconut. So of course I had to ask about coconut oil.
Apparently back in the dark ages before all the fancy testing they used to give children suspected of having MCADD fractionated coconut oil and if it made them sick then they had MCADD. I wonder how many false positives they had because I think it would make me sick. Fractionated coconut oil is processed down till they only have medium chain fats left. I guess they also give this to kids with VLCAD and LCHAD since they can process the medium chain fats. Anyway, according to the geneticist coconut oil only has 2% MCT so it really isn't take much and taking into consideration that every long chain fat he eats turns into a medium chain fat he already has them in his system. He also said that Buddy can process some just not many. I can't wrap my head around all the physics but he said he would be just fine and not to try to avoid it.
I know that everyone has their own comfort level and their own system. Some of us give our kids supplements and some of us don't. Some of us go 10 hours at night before we wake our child to eat and some of us go 8. Some of us have had many trips to the ER before the first year is up and some of us have none. I can't wrap my head around it. The geneticist says it is the rest of the gene makeup that sets all these kiddos apart. Whatever it is I wish they all could be safe and healthy 100% of the time. Am I going to cringe every time a little girl kisses buddy at the park? (the geneticist says there is only more of that to come ;) Absolutely! Am I going to yank him away from her and scold her? No (OK maybe if the are teenagers on my couch :) Am I going to shake my head every time he gets a huge spoon full of frosting? Yes, (I do with my daughter as well) Am I going to freak out about it? No
The geneticist says we are doing great with him, he told me the proof was sitting happily on my lap. I have never been a helicopter mom and don't particularly want to start now. I want my kids to have nutritious and healthy foods but I am glad that I don't have to stop either of them from enjoying a treat. There may be things that don't agree with him and as we learn that we can steer clear of those foods, at least we can let him dictate that.
Our geneticist is pretty laid back, where others just are not. I like it! It agrees with us and our lifestyle. I still do panic and worry that I am not doing all that I should for him but I have moments of that with my daughter who does not have a metabolic disorder. I think we all feel that way about our children, metabolic disorder or not. It must be in the definition for mother "constant worrier."